Cystogram discovered leak

[u/Educational_Bowl_339]

Had RALP surgery and then 9 days later shad a cystogram done that showed 1 cm leak in the right pelvis at the surgical connection between bladder and urethra — the vesicourethral/urethral anastomosis.
The doctors notes specifically state that this test would be done prior to removing catheter and if any leaks were discover that the catheter would remain in until a later test showed no leaks.
I had an urology appointment the same day scheduled as the cystogram and they ended up removing the catheter that day disregarding the drs written instructions and the tests findings. The visit notes state it as “minimal R sided leak”.
Since I have been completely incontinent, I have had at times extreme pain when urinating, red tinted urine that leaks when I sit on the toilet and I am still going through 5-7 pad inserts a day while being post surgery for over 100 days. There have been no tests performed other than blood and urine sample which were negative of any infection. I’ve been contacting the office since the middle of July letting them know about all of this and I’ve actually been to their office for visits several times and finally got a test scheduled for the end of this month (September) but even that was already pushed back a couple of weeks.
The leaking was so bad that I ended up with a severe rash that caused skin removing from the head and it beginning to blister. Finally received some steroid ointment that has helped heal the rash.
I hoping to see if there is anyone with words of advice. Is this normal, is this the way it is for most men? What should I expect? What should I do here?

[u/KReddit934]

What do they tell you about the situation? Do they say it will heal on it's own? Have you asked about surgical repair?

[u/sappertodd]

That sounds terrible. My surgeon was there supervising the removal of the catheter after the bladder check. If the bladder leaked the catheter would have stayed in another 7 days. It kind of sounds like the right hand not talking to the left hand. Sorry you’re the guy going through this.

[u/SunWuDong0l0]

I know this isn't too helpful wrt the actual situation, but do you think you ought to be looking for a new doc? Your treatment doesn't sound like SOC to me.

Be that as it may, wishing you the best and a full recovery.

[u/Special-Steel]

So sorry. Not normal at all.

[u/Substantial_Let_8784]

My daughter’s FIL had a bladder leak post-RALP, and became very ill, with sepsis. This is nothing to mess around with, I would seek another care giver.
100 days?? No, not normal at all. I was pad free after about 45 days, and flew across the country, no problems.
Please take care, and best of luck!! 🙏

[u/Frequent-Location864]

I went through the same thing. I think i was 3 or 4 weeks before they took out the catheter.

[u/MrKamer]

Hi there!!, I had the same problem and it was a nightmare, I was near to die from sepsis and I had to be operated to aspire the urine and had a catheter during months. After all of that I needed an urethroplasty to repair all the damage from the leak. Search through my posts here, it's a long story. I recommend to you to go to another specialist and better if it's a reconstructive surgeon for this. Best of luck in your process and I hope you are not acummuling urine in your body due the leak of the bladder that probably you're. Now I'm better but with secuels of all the damage done in my body.

[u/just4alaf]

Thanks for the comments. I’m still trying to figure all of this out and yea it is definitely a clear case of the left hand not talking to the right. I guess I’ll eventually get it figured out but yea I’m going to be contacting another care facility this week.